Tuesday, May 29, 2018

Infusions and IV Bruises


Camilla asked if I have any side effects from the immunotherapy, to which I replied, "None, except for the bruising that shows up a few days or even weeks later." In addition, I always start yawning at exactly the same place as we near Drammen on the day of getting my infusion, a sure sign that I'm getting Nivolumab and am not in the placebo group. I often need to take a nap as soon as we get home, and I'm often tired the next day. Other than that, nothing. If this is all I have to suffer for decades of life, I'll take my infusions dancing. 

Sunday, May 13, 2018

Being Present: Into the Second Year




The house is all ready for Sunniva’s fifth birthday party, and every single child we’ve invited is coming, except Imaan who is in Pakistan. There will be seventeen children from ages 2-9 running around here from 1400-1600 tomorrow and it will be a blast. An enormous Lithuanian is currently finishing the job on the back deck, and I’ve finished the gardens while Anette has done a phenomenal amount of baking and making rainbow-colored jello cups for every child.

Cancer does not exist in my mind, my brain or my life anymore. As I write these words I hear Dr. Dre rap about brain damage on the NWA track Express Yourself, and I refuse to believe that I have any. If anything, I’m stronger, smarter and in better shape than before my brain surgery and subsequent rounds of radiation and chemotherapy. I just did 25 pushups and 100 sit-ups, a very modest workout, but enough to make me feel good and to continue on the path towards the Fab Four Reunion this summer, and the Norwegian Masters’ Champs in March 2019. 

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Yesterday was epic. The actual party was a tremendous success, and the after party was even more fun. Sunniva was in ecstasy the whole time, running around the house squealing with delight at so many things, with Johannes following around as best he could and screaming even louder at times.

Of the fifteen kids we invited, two had to cancel due to sickness at the last minute but they came by with presents anyway. Hala came just as the party was ending but she stayed for another four hours with Zeitun, Tufah, Faisal, Kristian, Heidi, Tuva and Thale, our best friends here in Drammen.

Hala and Zeitun bonded over being refugees, Zeitun tried out her Arabic and admonished Hala that she is too young to fast when Ramadan begins in a few days. They also bonded over the difficult situation that Norway puts refugees in after they leave the introduction program: having learned the language and gotten a job, most refugees are forced to leave their homes and make it on their own, a policy that none of us understand. As sweet as baby Faisal is (everyone wanted to hold him) his namesake is another martyr in the ongoing war for Somalia. Abdulqadir’s brother called him three days before he died to tell him that he thought he was being targeted by the government, and sure enough, he was murdered at 0400 prayers in the mosque in Mogadishu.

What do we as privileged white people say to this? How do we comprehend the utter devastation and hopelessness Somalis - and so many other Africans and poor people of all colors - have to contend with daily? OK, I’ve survived Cancer but it hasn’t been that difficult; I’m not in danger of getting shot or chased out of our lovely home.

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Have just had a perfect family moment crying from happiness and the wellspring of emotion that the best music (in this case, Graceland) always brings forth in me. Instead of hiding my tears, Anette made it a point to show Sunniva and Johannes that Daddy was crying tears of joy, and then they all gathered round me to sit on my lap and give me hugs and kisses, which really are the best medicine for any ailment.

Johannes in particular found it hysterical that Mommy was sitting on Daddy’s lap, so we repeated the stunt to the children’s delight, and then had a role reversal where we all sat on Mommy’s lap. This helps me to feel that there is still lots of joy left for us to experience as a family, even as I felt that the peace and calm of holding little Faisal was an ephemeral time that had passed us by forever. I found myself questioning whether I had fully appreciated Johannes as a baby as much as I did when I drank in the smell of Faisal’s head with my nose, his thick black hair warming my nose and mouth. 

But today has given me the answer – of course I did, or Johannes wouldn’t be leaning his head on my chest right now as I write, nor would he have copied my movements and the positioning of my hand under my chin at the table in the moments preceding my tears. We are the perfect family, Anette is the perfect mother, I am the perfect father, Sunniva is the perfect daughter and Johannes the perfect son. And it will always be this way, regardless of what happens to us in the future.

Through my tears I leafed through Sunniva’s two albums with her sitting on my lap, looking back on so many wonderful memories of quality family time both here and in America. Johannes’ first album will be ready in June; hopefully Olivia and Chris can bring it with them to Bergen. As I return to Nicole’s interest in the genealogy work I’ve done, I ask myself again what’s the rush in returning to work full-time. Wouldn’t it be better to use these next years to be fully present for my family while continuing to hone my writing skills? That way I could make sure that the story of our extraordinary family is told for all generations who follow. One moment at a time, one word at a time. So far this diary is at 12962 words, and I have all my other blogs as well. Where will it all end, and in what form? More will be revealed, Insh'Allah.